Thursday, June 10, 2010

More Bits and Pieces (Including a Chance to Win 100 Grand)

Well, it seems like the past few days have brought a blizzard of interesting MS related items my way, so here's another collection of tidbits, offered up for your interest, education, and enjoyment...

I've decided to stop my experiment with Ampyra (click here for info on Ampyra). Although the drug did seem to give me a slight increase in strength, it also left me feeling lousy; upset stomach, chills, kind of jittery, just generally blech. I'm quite disappointed, because, as I said, I did feel a slight but noticeable increase in strength, but after consulting with my neuro's office, I decided to call it quits after two weeks. It's been about three days since I last took Ampyra, and all of the negative side effects (which kind of felt like the flu) have resolved. The slight benefit I got from the drug just wasn't worth it. So, that's the news on the legal drug front.

On the illicit drug front, I finally decided to see what all the hubbub about medical marijuana is about, since I've had a lot of trouble sleeping through the night for the last few months because of spasticity and the pain in my joints caused by Avascular Necrosis (click here for info on Avascular Necrosis). Every night has been a restless saga of falling asleep in one position, and then after an hour or so waking up because of the discomfort and spasticity to painfully change positions, only to do the whole thing all over again in another hour or two. Doesn't make for a well rested Wheelchair Kamikaze. In fact, it makes for an unpleasantly cranky Wheelchair Kamikaze. I've never really enjoyed the marijuana high, even as a teenager, but since I keep reading that Mary Jane can do wonders for spasticity and chronic pain, and might even have neuroprotective properties, I procured some of the demon weed, and have taken one strong hit a few minutes before going to bed for each of the last three nights. Happy to report that I've slept better under the influence of reefer than I have in months. I'm now going to insist that Karen decorate our apartment in blacklight posters and lava lamps, and I'm going to start using the word "groovy" to an annoying degree. Medical marijuana is groovy...

The groovy NMSS has sponsored a series of groovy MS patient video profiles called "We Keep Moving" (click here for the groovy website), and sent a groovy video crew all over the USA producing groovy short video pieces highlighting the very compelling and groovy stories of 10 different groovy MS patients. The 10 groovy videos were shot over the course of 10 groovy weeks, so this was an intensive and very groovy creative endeavor. The team that produced the videos (groovy Producer Kate Milliken, groovy Photographer Amelia Davis and groovy Director Jason DaSilva) are all groovy MS patients themselves, so in addition to their considerable groovy professional talents, they brought the groovy compassion, groovy empathy, and groovy understanding shared by groovy fellow patients to the project. Definitely recommended groovy viewing.

Okay, enough with "groovy". All grooviness aside, the above videos are really, really good, and kudos go out to all involved. I strongly recommend that everybody click on the above link and check out the "We Keep Moving" project.

While we're on the subject of videos, Canadian television network CTV has produced another video news piece on CCSVI, this time profiling a patient who traveled to Poland to undergo the Liberation Procedure (click here for video). Again, highly recommended viewing. I plan on doing a longer essay expressing my thoughts on the current state of CCSVI, which I should be posting here on WK within the next few days. Be on the lookout...

The latest edition of MS In Focus, putout by the Multiple Sclerosis International Federation, is now available online (click here). I found this issue especially interesting, as it features complementary and alternative medical approaches to the treatment of MS, including acupuncture, LDN, cannabis, and others. All in all, a very good overview of treatments that could be of benefit to MS patients, most of which fall outside of the mainstream medical narrative.

Wheelchair Kamikaze readers in the Seattle, WA area who want to help the cause of CCSVI research (specifically, the University at Buffalo's Neurological Analysis Center, which is doing a variety of CCSVI related research-click here for BNAC info) and have themselves a grand old time while doing so can attend a fundraiser at The Pink Door, a restaurant owned by MS patient (and WK reader) Jackie di Roberto, who was nice enough to send me a physical invitation. I wish Seattle was closer to New York, because it looks like the fundraiser will be quite the shindig, complete with food, wine, and entertainment that will include trapeze artists, musicians, tarot card readers, and stilt walkers. (Click here for more info)

About.com's always informative MS channel features an article this week that covers how to go about finding a new MS neurologist if you are unhappy with your current one. A common theme among almost every MS Internet forum I've ever been part of is "I hate my fracking neurologist!", which is truly tragic, since as sufferers of a chronic and thus far incurable disease, we are locked in a long-term relationship with the doctor who manages the care and treatment of our illness. Many patients, it seems, feel trapped in a dysfunctional relationship with their neuro, but feel overwhelmed at the prospect of switching physicians. Written by Julie Stachowiak, who wrote the recently published book "The MS Manifesto", which received the coveted Wheelchair Kamikaze stamp of approval in my last post, this article gives sage and practical advice on breaking up with your current neuro and choosing a new one. (Click here for article)

Finally, here's the "How to Win $100,000" part. The Multiple Sclerosis Research Center of New York (click here for info on the center) is holding a fundraising raffle, in which 2000 tickets will be sold at $100 a piece. The proceeds of the raffle will be split between the Research Center and the lucky person whose ticket is drawn as the winner. So, everyone who buys a raffle ticket is not only helping the MSRCNY do cutting edge MS research (which includes looking for disease markers, developing novel treatments for MS, and doing pioneering work in neuroregenerative techniques), but is also giving themselves a 1:2000 shot at winning $100,000, which are far better odds than the chances of winning an equal amount in any typical state run lottery. Additionally, for those in the New York City area, the center holds an annual patient symposium, which this year will be held on October 10, and will cover topics including oral medications, CCSVI, myelin regenerative therapy, naturopathic MS treatments, and MS across the lifespan. The cost of attending the symposium is a whopping nothing; it's free. I'm a patient at the International Multiple Sclerosis Management Practice, which is the clinical arm of the Research Center, both of which are run by Dr. Saud Sadiq, a well-known researcher, terrific doctor, and all-around good guy. For more information on both the raffle and the symposium, please contact Pamela Bloom at 646-557-3858.

Just wanted to say hi, and to agree with you about the doctor/patient relationship. Why in the world would anyone stay with a doctor they didn't like? I don't understand some people - they are strong willed, confident, smart, and when they go to a doctor they lay it all at the door and become some sort of Stepford-person. I have a great relation with my neuro, and its because its a give/take relationship. He relies on me to speak up and keep him informed, and take part in my treatment.

p.s. - I'm glad to hear the weed is helping. Have you started hoarding/stashing away cheetos yet?

Did you try LDN instead of medical MJ?I'm waiting for the next CCSVI part. BTW, did you read the professional conversation on CCSVI? Here is a link http://ccsvinews.blogspot.com/2010/06/professional-conversation-on-ccsvi.html.Thanks again for your posts and God bless.

I do both the LDN and the demon weed and I sleep all damn night now where I was a 6 or 7 time a night getter upper for the longest time from spasticity and the like. I'm so very glad it's helping you in that area; a good nights' sleep is NOT over rated. I tried to not do it before bed as a self conducted experiment for two weeks. Slept like shit and here I am back on the gange at bedtime. Good luck and I'm getting ready to start my own Ampyra experiment to see if it helps me walk and maybe pee better.

I keep some MJ in the freezer just in case...I'm so damn tired these days that sleeping through the night isn't a problem. I've had to quit performing (solo fingerstyle guitar)because these days I can't play for more than 20 minutes before things start misfiring between my brain and my right hand. MJ helps me play a little longer, but I don't play well stoned. If I'm jamming with friends across the canyon, I stick to rhythm guitar which is way easier, but about 45 minutes is it. Sigh...

I love the "We Keep Moving" series. I think I saw one of the early vids about a month ago.

I LOVE my neurologist, but I'm afraid he's going to retire soon. He's 76 years old and LISTENS and doesn't dismiss anything. But to all of you out there who are daunted by the prospect of finding another neurologist, power on! There are good ones out there!

wow lots of good info! I had a hard time on ampyra too...made me wicked moody and sleep became a forgotten dream...until I stopped taking it. Sleep is still not my best talent any more...I'm likin' the medical marijuana idea though...might be awkward with two teenagers in the house though...I love the We Keep Moving videos too...very inspiring.

I hope you continue to benefit from a good nights sleep, that's bound to increase your energy level.

Ok. Question. Is anyone putting together a USA CCSVI collaborative? I would volunteer to lead the MN/Midwest Chapter. My daily research of CCSVI consists of Wheelchair Kamikaze and ccsvi facebook and then I am on my own. Any ideas? Have a great weekend. Kate

I'm experiencing good results on Ampyra. Although I did experience an upset stomach and a few nights of insomnia, it has been worth it because my foot drop has improved--this after only one week.

As for medical marijuana, I'm 100% for it if it helps relieve any of the symptoms associated with MS. In fact, if the high just gives you a temporary escape from the reality of the disease, it's worth it.

So glad you mentioned Jackie's party at The Pink Door. It should be a groovy good time! If you can't attend in person but would like to donate to support BNAC, instructions are on the website: http://www.thepinkdoor.net/events.html

I attended yesterday a whole day of Harvard conference on the latest in MS.Looks like Mayo clinic identified a new kind of MS which they call "neuromilitis optica".I am not a medical professional and was there because of MS in the family.In laymens terms: the desease starts with no lesions on the brain.Original symptoms could be a nausea and hiccups. Mayo clinic identified antibodies to diagnose it correctly and the treatment is somewhat different from MS treatment.

i remember reading somewehre that "God put pot here for us, not Tylenol 3 or hydrocodone"...i wish the lawmakers in the world saw it the same way!

i dislike my neuro somewhat, BUT i LOVE LOVE LOVE his nurses and office staff! they get things DONE!! so i am torn between not loving my neuro (VERY old school) and loving his staff and knowing that i wont find another support staff that is as well, SUPPORTIVE as this one...sigh.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...